Editor’s Note: In early July 2025, after this article went to press, the “One Big Beautiful Bill Act” was passed by Congress and signed into law by President Trump. NBDF will continue to work alongside partners and advocates to oppose harmful provisions and will keep fighting at the federal and state levels as this law is implemented.
On May 22, 2025, the U.S. House of Representatives narrowly passed H.R. 1, the “One Big Beautiful Bill Act.” The legislation prioritizes national goals in tax policy, defense, and immigration, and proposes substantial budget reductions to fund those investments. As a result, key health programs — including Medicaid and other vital public health services — face significant restructuring.
Change is a constant in public policy. But for millions of Americans living with complex and chronic health conditions, the nature and speed of that change matter deeply. What’s at stake is not only fiscal balance, but continuity of care, access to treatment, and — ultimately — quality of life.
At the National Bleeding Disorders Foundation (NBDF), we understand the immense responsibility of crafting sustainable, future-focused health policy. We also understand the human cost when vulnerable populations lose access to the support systems they depend on. Together with our partners, we are working to raise awareness and promote constructive dialogue to protect the health and dignity of those we serve.
Medicaid in the crosshairs
One of the most consequential aspects of the bill is its proposed restructuring of Medicaid — the nation’s largest health insurer for low-income individuals.
Among the proposed changes are new work reporting requirements for certain adult enrollees, revisions to eligibility and enrollment processes, and reduced federal matching funds for the 40 states that expanded Medicaid access. The bill also introduces cost-sharing measures such as copays for services and prescriptions, which could create additional barriers to care.
These policy shifts are not merely administrative. According to an early analysis by the Congressional Budget Office (CBO), they could result in up to 10 million people losing coverage by 2034.
The bleeding disorders community is particularly at risk. Approximately 30% of individuals with bleeding disorders are covered by Medicaid, relying on high-cost biologic treatments — sometimes multiple times per week — to prevent dangerous internal bleeding. Without access to this care, long-term complications such as joint damage and disability become inevitable.
In a May 2025 letter to Congress, NBDF and allied organizations emphasized that changes to Medicaid must not come at the expense of human health and safety. “Introducing administrative complexity into an already fragile system risks pushing vulnerable patients out of care,” the letter warned.
These concerns are also shared by our partners in the sickle cell community, who face parallel challenges in treatment access and care continuity.
Evolving the Affordable Care Act
The bill also outlines a set of changes to the Affordable Care Act (ACA), including adjustments to subsidy eligibility and the discontinuation of enhanced premium tax credits after 2025.
Without these enhanced credits — introduced during the pandemic to increase affordability — marketplace premiums are expected to rise by an average of 75%, potentially leading to over 4 million Americans losing coverage. Other proposed changes, such as shortened enrollment windows, may further complicate access.
For families managing rare and chronic conditions, including bleeding disorders, the ACA’s marketplace often fills critical coverage gaps. Limiting access to this safety net could mean fewer people getting the care they need — when they need it most.
The bleeding disorders community has a history of success in this area. “In 2017, NBDF (then NHF) was instrumental in securing bipartisan support opposing the various ACA repeal and replace measures,” says Nathan Schaefer, senior vice president of public policy and access at NBDF.
Faces behind the policy
Behind every policy debate are individuals and families whose lives will be directly affected.
A child with hemophilia who receives weekly infusions to prevent painful bleeds. A young adult with von Willebrand disease who has transitioned off a parent’s insurance. A person living with factor X deficiency, navigating crisis episodes that require specialized care. These are the human stories at the core of our advocacy.
In a letter signed by several bleeding disorders advocacy groups, national leaders noted: “The proposed Medicaid reforms risk limiting access to outpatient care and essential treatments. For many, this could mean more hospitalizations, greater disability, or worse.”
The same letter raised concern over the bill’s impact on the new CMS Cell and Gene Therapy Access Model, which seeks to make groundbreaking treatments more accessible through Medicaid. Without stable coverage pathways, participation in such forward-thinking programs becomes uncertain.
Federal agencies in transition
Alongside the proposed legislation, recent restructuring at the Department of Health and Human Services (HHS) has caused uncertainty for federal public health programs.
In April 2025, NBDF and more than 90 national and regional partners submitted a letter to HHS Secretary Robert F. Kennedy Jr. raising concerns about recent changes at the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) that may affect bleeding disorder surveillance and maternal-child
health initiatives.
Programs supported by the CDC’s Division of Blood Disorders and HRSA’s Hemophilia Program have long played a vital role in advancing public health through research, education, and safety monitoring. While modernization is important, continuity is critical.
As the April letter stated, “Efforts to streamline government must preserve the services that improve care and save lives.”
340B reform and access to medications
The bill also includes reforms to the 340B Drug Pricing Program, which enables safety-net providers to offer discounted medications to patients who need them most.
While many of these reforms aim to improve transparency and reduce misuse, some could unintentionally limit the ability of small hospitals and clinics to provide affordable care. Proposals to report profit margins and reduce certain reimbursements raise important questions about long-term sustainability.
NBDF supports accountability in public health spending — but we also believe that reforms must be carefully calibrated to avoid disrupting care for underserved populations.
The path forward: Collaboration, not collateral damage
NBDF remains committed to advancing solutions that support both fiscal responsibility and patient well-being. We know that policies must evolve. But the path forward must not leave our most vulnerable behind. “With unity and perseverance, we can prevent these drastic cuts and ensure the health and well-being of all members of the bleeding disorders community,” Schaefer says.
We invite policymakers, agencies, and fellow advocates to work with us. The bleeding disorders community has always embraced innovation and partnership — across political lines and in service to shared values of equity and access.
This is a moment to lead with hope, not fear. With compassion, not conflict. And with a shared resolve to ensure that no one is left without the care they need to live a full and healthy life.
Click here to get the latest updates from NBDF on advocacy priorities.